Still here. In fact, not going very far

I’m not the story you’re looking for, but in the interest of making available, to you, an alternate view, I will share mine. It’s worth a try because I keep having this hope that the current paradigm of one sidedness will shift. 

I am a tax paying Canadian who despite living a clean and super healthy life, got a vaccine injury in 2009’s H1N1 vaccination initiative that has completely taken my ‘normal’ life away. I now have a deadly (unless on constant chemo, blood thinners, etc), incurable disease that was in fact mentioned in the H1N1 monograph as a rare potential negative side effect. I worked for Parks Canada, biked almost every day in summer, skied almost every day in winter, ate organic home made food, was a new mother, volunteered in my community, voted for our liberal government. I was you. And then I wasn’t. 

Since then, I haven’t been able to get a vaccine as my body’s immune system takes the signals from a vaccine for an increased immune response, can’t stop itself, and then goes after my own body. In my case, my vasculature (I have Wegener’s Granulomatosis, a type of Vasculitis). My daughter, who was just over 3 years old when I got sick, lived through having to say goodbye to her mother, for ever, more than once, and carries a significant amount of PTSD from seeing what a vaccine injury can do to a family and a person’s life. She also chose not to get the vaccine, especially since my diagnosis, we’ve learned that autoimmunity has two factors that are completely, certainly known… 1. there is a genetic predisposition, and 2. there is a trigger. For me that trigger was the vaccine. For her, she doesn’t want to find out if her genetics lean more toward me or toward her dad. Her dad is vaccinated, and he has had 3 shots. (I feel I can share that since personal medical privacy went out the window when our governments insisted on QR codes to be scanned by any host or hostess working at any eating establishment, or business letting people in.)

My kid and I are now both stripped of our chartered right to mobility, for the government described ‘selfish’ act of our legally and ethically described right to informed consent. The narrative has gotten so divisive that I can’t even have a reasonable conversation with anyone who is hard core pro vaccine and against self determination/choice (but most of them are pro-choice in other matters). We are to ‘follow the science’ but then are mocked for looking up the science, in essence saying that the only acceptable ‘science’ is that coming from government agents or our one sided media. 

Both my daughter and I had Covid in March. It was brought home by one of the two vaccinated people in our home, and everyone went through it. My mom, living with us since dad passed in 2020 (not of Covid, he got cancer) was the first to get it, and went through it the hardest. My husband, also vaccinated, went through about a week of feeling horrible, and he’s been fine since. I was told by my rheumatologist to get the monoclonal antibody treatment as I’m on heavy duty immune suppressing drugs, so I did so. My entire covid infection lasted 8 days from first symptom, to testing negative. I got the treatment on day 5, and was already feeling much better at the time. My daughter, now 15, was sick for about 5-6 days, and it was no worse than a regular flu. Her and I still can’t travel on a plane, train or boat. I can’t get a vaccine for 3 months after monoclonal antibody treatment (as per instructions), and they recommend that you don’t get vaccinated for two months after infection, so she can’t get one either, although she will not regardless. But we’re still denied our chartered right to mobility, while Canada lets anyone coming in to move about freely without testing, despite knowing that 96+% of vaccinated people who test positive are asymptomatic carriers. 

Before the vaccine we were all in this together. We were doing all of our safety efforts to ‘protect the vulnerable’ (hint: I’m that part of the population). Once the vaccine came out, and our government made it mandatory, the whole ‘protect the vulnerable’ and ‘we’re all in this together’ talking points took a long walk off a short pier. The vaccinated became the ‘hero’ and the unvaccinated, according to our Prime Minister, became a ‘waste of space’.

I’ve gone through a lot in my life. I’ve come through it all super positive (I started a foundation after diagnosis, and created an annual event to raise awareness for autoimmune disease – this site has the archives to show you if you’re interested), and I’ve always looked at the bright side of any hard situation. Our government has broken me over this. I’ve never felt so alone, so helpless, so discarded by those meant to support and protect me as I do today. I regret my life long support of liberal government, and liberal narratives, because now I see it’s all about virtue signalling and they don’t actually mean what they say. I hate the right of centre and their close mindedness, but I feel totally and completely betrayed by the left, and I can’t see myself fitting anywhere in this society right now. It’s really the saddest time of my entire life (and I was an immigrant kid who spent time in an Austrian prison and refugee camp, while escaping communism, who came to Canada without English and hat to fit in with my two outfits I came with, who was told to make my final arrangements when they misdiagnosed me with terminal cancer before I got my Wegener’s diagnosis, and many other things….) but now they’ve broken me.

The 85% of you who are vaccinated, don’t even know these rights are still kept from tax paying Canadians, because this blatant disregard for humans isn’t affecting you personally, and the media, including our local paper, refuse to let you know. I hear and see it all the time. If I feel comfortable enough with someone to mention this, they’re always wide eyed, at first telling me it can’t be true, then realizing they don’t actually know if it is or not… looking it up and going silent. Let me tell you from personal experience. It is true. Everything these days is tribal. Tribal to the left, and tribal to the right, and I fear that common decency, rational thought, and compassion, have completely abandoned our society. The right talk about themselves and fuck everyone else, the left talk about protecting ‘the vulnerable’ while literally giving the vulnerable the finger. Humanity is really sucking nowadays, and we’re devolving at an epic pace. And we have a prime minister who is testing how much he can get away with, and you 85% are letting him get away with far too much. He wont listen to me, remember, I’m a waste of space in his eyes, but he might listen to you heroes. Be a hero for more than rolling up a sleeve.

Anti-vax vs Pro-vax vs Inteligentsia


As I was driving around doing erands last week, I stumbled on Cross Country Check up on CBC. Rex Murphy was checking up on Canada, and had as his guest, Dr. Michael Gardam.

It was a pleasure to hear Dr. Gardam speak on CBC, and
I’ve decided that Rex Murphy is definitely a ‘pro-vaxer’, I waffle, and Dr. Gardam is the intelligentsia (only the forward moving type.)

It was very empowering hearing Dr. Gardam’s opinions on vaccines, the hot topic of the day in regards to Measels, and a hot topic with me as the H1N1 flu shot was the trigger, twice, for my incurable and potentially life threatening health issues. I’ve been getting sucked into too many discussions on this polarized vaccine topic, where “you’re either with us or you’re against us” mentality rules the day. This feels like a black and white world, where as soon as you question how things are working, you’re an anti-vaxer, and should probably go shine your aluminum foil hat. This is how I’ve been feeling while listening to the media, sad that we’ve gotten to this point, where opinions are so strong, people are seriously talking about eliminating basic human freedoms. The freedom to choose what we inject into our bodies. It’s absolutely mind blowing.

I don’t jump into these conversations because I want to stop anyone from getting a vaccine, but because I want them to make smart, informed decisions that weigh risk and benefit as it relates to them and their particular health and family history vs the medication or vaccine you’re deciding on. I share my experience in the hopes that the mistakes I made (jumping in pretty blindly, and despite my gut feelings, believing that it is as safe as all the nurses and doctors said it was,) can be spared someone else, as sadly, this is a road of no return.

So it was nice to hear Dr. Gardam speak for the 20 or so minutes I was in the car. Pretty much everything I heard him say was in line with my own thinking, and suddenly I didn’t feel the kook that all the loud pro-vaxers, and their media puppets were trying to make me feel. He said that people should research and truly make informed decisions. Check.  He said that people should be aware of the sources of their info. Check. He said he trusts the old proven vaccines. Check. He said we need to rethink flu and young vaccines. Check.

So it was with great interest that I listened to a caller ask about a number of autoimmune diseases. She stumbled around her words too much though to ask a good question.I wanted to hear Dr. Gardam’s response. Problem is people at large, still don’t get that autoimmune diseases are a laaaarge number of diseases with the same etiology, so she was mumbling a few autoimmune diseases, and then she did it…. she dropped the ‘Autism’ bait. Ughhh. As soon as I heard it I knew I wasn’t getting an answer. Then it became a discussion of the discredited MMR/Autism study. Question gone. Someone else called, and then another person brought up autoimmune disease, I think type 1 Diabetes, maybe MS, but then again, in comes, Autism, and this completely removes the conversation from where it needs to be. I was so hoping to hear him speak on autoimmune disease, but I didn’t get to. Apparently he did, I’ll have to go back and listen to it.

I believe we need to be skeptical and informed. Just because a non human entity has told you that this is safe to inject, doesn’t mean you have to do it. If there is long standing data to support safety and efficacy, by all means protect yourself and your family. But if this vaccine is younger than some of your shoes, maybe you should do some serious self educating and make a truly informed risk-benefit assessment.

When you’re looking at the numbers remember that even if the chances are low, if you’re that person who got the rare negative side effect of the drug/vaccine, suddenly that low risk means nothing, and your life has taken a turn in a different, unpleasant direction.

Perspective Break: Gardisil
A spanky new HPV Vaccine to prevent HPV spread through sexual activity

Approved for human use in 2006.
Vaccine demographic: 10 year old girls across the country
Long term side effects: Unknown (it’s not eve 10 years old)
Cost of one dose: $400-$500
Since June 2006 Merck has globally sold 169 million doses
(you do the math: hint – it’s in the Billions)
Serious Side Effects: Rare – 5 reactions in 11,000 (possibly, probably or definitely related to the injection.)
(here’s the math)
Since June 2006, 76,818 young girls are possibly, probably, or definitely having a shitty go at life because of this vaccine.

Are we really OK with having 76, 818 young girls sick, with serious life altering complications from a vaccine? To prevent sexually transmitted diseases? We don’t think very highly of our young girls. Is that the kind of place my daughter is going to grow up into? This is just one example of a young vaccine. There’s that pesky flu shot, medical boards are trying to convince us is absolutely THE thing to do if you’re a smart citizen.

Couple more points worth noting when you decide where to place your trust.

Russia and Canada are the only two countries in the G8 who do not have a system to support victims of vaccine adverse reactions. Yes, everyone knows there is a risk, and with the numbers we vaccinate, the numbers with adverse reactions will go up as well, but in Canada, our government has chosen to turn a blind eye, as well as protecting pharma companies from litigation when it comes to vaccines.

When you hear Health Canada tell you the vaccine is safe because they have very low reports on adverse reactions, that’s because the system is set up in a way to minimize feedback on vaccines. Whether it’s accidental or intentional is not my business, but it does skew the data and the information we are getting from Health Canada does not paint a true picture. Anyone can check this out. Try to report an adverse side effect from a pharmaceutical drug on Health Canada’s website. Anyone can do it. Now go and try to do the same with a vaccine. Two different worlds. With a vaccine report, you have to get your doctor to fill it in and submit it on your behalf. Several pages. What conscientious patient would do that to their doc? All my docs know that the H1N1 triggered me (it’s also in the drug insert – Vasculitis is a rare but possible adverse reaction to the H1N1 vaccine) but I would never ask them to take time away from their other patients, and to put their reputation on the line so they could write a vaccine report for me, because let’s face it “you’re either with us or against us…” even within the medical community. Why I was so pleased to hear Dr. Gardam speak in the open minded, academic manner he did on this topic. It was truly a breath of fresh air.

So there. I’m the eternal optimist, but my experience has taught me to question, to not bleat on at volume, to not believe with blind faith that a big corporation (that has only it’s stakeholders/shareholders to answer to,) has my best interest in mind.


My amazing doctor and her Vasculitis Colleagues are having a Symposium next week and patients are invited to come. By supporting these kinds of events we are sending a message that we want more of this going on in our communities. Forward momentum. Try and make it out there if you are one of the Vasculitis patients living in Alberta, BC or Saskatchewan. Maybe we’ll see you out there. It will be in Calgary on October 2, 2014 and the detailed info is below. Here is the information: 2014 ACH VASCULITIS SYMPOSIUM PATIENT & PARENT FORUM 2014 Vasculitis Evening Forum How does vasculitis research improve the care of patients? Thursday, October 2, 2014 1800-2030 ACH Kinsman Learning Centre (4th Floor), Alberta Children’s Hospital PATIENT & PARENT FORUM (Dinner Buffet) This forum is an opportunity to: • hear a panel of health care providers talk about research and vasculitis • pose questions to the panel • meet other patients & parents REGISTRATION EventBrite tickets-12585307995 SYMPOSIUM BROCHURE Calgary Vasculitis Symposium Patients & parents are also welcome to attend the daytime symposium on October 2, 2014. Please see conference details in the attached PDF’s. CALGARY VASCULITIS SYMPOSIUM  2014 FINAL Vasculitis Day Program Update on Childhood and  Adult Systemic Vasculitis Thursday, October 2, 2014 0800-1540 This symposium is an opportunity to learn how vasculitis research is improving the care of patients. Participants will have an opportunity to learn about diagnostic options, new treatments and long term outcomes of vasculitis affecting children and young adults. This day will help to strengthen a network of healthcare providers interested in vasculitides.

Measles outbreak and what we should really be talking about

There’s been so much talk about the current Measles outbreaks in Alberta, BC, and some places in the US. The constant discussion I hear is about vaccinations. We keep hearing about how vaccinations are our only way out, but this discussion is completely dismissing the enormous group of people who are already immune suppressed and what the dangers are for them.

These are the folks with Autoimmune Diseases, Cancer, AIDS, Organ transplants, and more. We, the immune suppressed, make up a fantastic piece of our population pie. Yet the media is so focused on getting more people vaccinated, they were even talking about the merit of making vaccinations mandatory in Alberta yesterday on CBC. What a load of ka-ka. Just another example of the lack of real knowledge about Autoimmune Disease and how it changes people’s lives once acquired. Why are we as a society always looking for the easy way out when it comes to our health? What about promoting healthy habits, like washing frequently, staying home when sick (instead of proving what a super hero you are for going to school or work) not touching your face holes, eating well, exercising. Too tough for us. It’s much easier to go and get jabbed and call’er done.

What about creating a separate room for either the patients who come in with obvious contagions or for those who self announce a compromised immune system…. for whatever reason. This would stop countless, unnecessary deaths and millions of dollars nation-wide on the healthcare required for those exposed and subsequently fighting for life.

A friend of mine, sportin’ the same flavour of Autoimmune Disease as myself, had to take her mom to the hospital a couple weeks  ago. She was in the waiting room with a girl who was obviously dealing with a bad stomach virus. The girl was vomiting in a bag, but she was moving from chair to chair in the waiting room, touching everything, including her peuky face and recklessly spreading her virus around. Within days my Weggie friend was in serious trouble. She has had Rituxin infusion and is on a mellower maintenance chemo and has very little immune ability to fight new invaders. She called Health Link and was completely dismissed by the nurse on the line. “Big deal you have an autoimmune disease. It doesn’t make any difference on dealing with a virus. Just drink lots of fluids.” My friend was contemplating calling for an ambulance at one point because she listened to the ignorant nurse and didn’t see a doctor.

For those who are unaware of the risks, here’s what can happen when you’re exposed to a viral infection when you’re immune suppressed.

There is nothing we can do about a virus, other than take anti-virals if the risk is too high. We do need to advise our docs either way so that if things go south, they are ready to respond in a timely fashion. A viral infection can also open the door to a bacterial infection. These are often times trickier to deal with than viral infections given the circumstances. Also the complications that are usually listed as ‘rare’ with various diseases like Chickenpox, Measles, Mumps etc., are the ones we, the immune suppressed, have to worry about. Encephalitis, pneumonia, and death among others.

So instead of wasting valuable energy on shaming people who have made a decision based on research or their health condition we should try and keep the more vulnerable in our society safe. I for one not only can’t have any vaccines and the treatment I am on has destroyed any of the immunity I had developed through my life by getting various illnesses or through vaccines prior to getting sick. Also it was the H1N1 vaccine that was the trigger for the onset of my incurable, life threatening illness that completely changed my life for the worse. Health Canada owes me one.

“The True Measure of Any Society can be found in how it treats its most vulnerable members” – Ghandi

How do we stack up?

Autoimmune Disease has it’s inflamed little fingers into many pots

Today I read an article about Heart Disease and how there is a new line of thinking that links the process that causes most of the problems in patients with Autoimmune Disease to that of clogged arteries. Inflammation.

Read the article here:
If you feel that you need back-up on this line of thinking, here’s another article that isn’t as bold, but goes in the same direction and it’s from the American Heart Association:

Another important connection that nobody seems to talk about is mental health. I don’t understand why we can understand that inflammatory responses can happen anywhere in the body, but completely take the brain, a vital organ, out of that equation. Why do we completely dismiss the brain as being susceptible to an inflammatory response that can run rampant in any other part of the body and cause one of the 140+ autoimmune diseases and disorders. How many lives can we save from endless suffering by connecting autoimmune disease with mental health disorders? Here’s a book that can bring this concept a little closer to home and might save your life if you’re a patient like me who likes to push and challenge the robotic responses that we often get from the overworked medical professionals. This is the story of a patient who almost lost everything until she landed in the care of the RIGHT doctor…. Brain on Fire

We also know that Cancer is very dependent on a faulty immune system in order to progress, and now there is a new line of Cancer research that uses Immunotherapy to try and get answers that continue to elude the cure for Cancer research.

So if we go back to my earlier post looking at the stats and our current research trends ( you can see a serious crack in the system. The disease group where answers dwell for all the others (including ones that are not on the charts like AIDS, Infectious Disease, Transplantation) is the group of disease that has the least amount of attention and research funding.

I think this is wrong. So very, very wrong.

Back in my earlier post that I referred to above, my thought process leads me to a place where I wonder if the answer is just below the surface of a cache we haven’t yet searched.
I’ve been questioning myself lately in my stubborn and unyielding view that if we find the common thread we can find the answer/cure to ALL of the Autoimmune Diseases. I feel like a person with serious delusions of grandeur. Today, instead of checking my big dreams a bit like normal people would, I’ve taken it one step further. One giant, giant step further… what if we find the common thread and the answer leads us to not only find a cure for ALL AI Diseases, but also for Cancer, for Heart Disease, for AIDS, for all of the chronic illnesses.

Now wouldn’t that be something that would change things a bit or what?

We have gone for so long in our own little holes, our own silos, fighting for our own little diseases and not the whole, but the big picture is becoming more and more clear. It dictates that we work together: Be it within the disease group (autoimmune, cancer, mental health) but I believe it would be more positive by working in a multi-disciplinary, multi-disease way. That’s when we’ll get the answers we all so desperately work for in our own groups. Our answer lies in working together.


Only together will we see a difference. We’ve tried the ‘solo’ approach for decades and it’s gotten us nowhere really. Yeah we have some crazy drugs that keep us alive, but at a huge cost not only to the patient and their families, but also to our health care system and society at large.

So snap out of it people, we must let the ego go, and let’s do this. Let’s do it together. Let’s change the world for the better.

You in?